Paxiao CDH Journey

Hi everyone and thank you for being here to read our story. After struggling with infertility for two years and doing various interventions, by the Grace of God, Jordan and I conceived naturally. Nine weeks after the exciting news of becoming pregnant, we found out we are having our first boy. We are so in love with our sweet boy and can’t wait to welcome him to our family.

On 8/25/23, we had our 20 week anatomy scan and got news that no parent is ever prepared for. After our scan the doctor came in and shared that our precious boy has a life-threatening developmental birth defect called Congenital Diaphragmatic Hernia. What this means is his diaphragm did not form correctly, leaving a hole and allowing his abdominal organs to travel into his chest cavity and shift his heart to the right side of his chest. The main concern with this condition is lung and respiratory development. Due to the lungs being crowded by other organs, they have limited space to grow and properly develop. The organs can also suppress his heart.

Since receiving this devastating diagnosis, we were referred to UC Davis Fetal Treatment Center where we had several tests including an echocardiogram, MRI, ultrasound, and consults with Maternal Fetal Medicine. Our son's diagnosis was confirmed through these tests as a Left Congenital Diaphragmatic Hernia. His stomach and bowel intestines are in his chest cavity and has pushed his heart to the right side of his chest. With these organs in his chest, his lungs are unable to properly develop and are expected to reach only 33% of volume growth at the time of birth. His expected lung volume, organs in his chest, and heart dextrocardia, our boy's case is considered severe. We interviewed our team and learned that UC Davis does not specialize in this condition and estimated treating 5-10 babies per year. Baby boy would have several specialty doctors that change shifts weekly. These numbers and information did not sit well with us so we reached out to the CDH community we have connected with and researched specialty CDH doctors and hospitals to inquire for a second opinion.

We were connected with John Hopkins All Children's Hospital in St. Petersburg Florida. JHACH has a specialty CDH unit and dedicated team just for these tiny warriors. We scheduled a consultation and they gave us so much hope. JHACH has an entire unit that will be present when the baby is born and he will remain in their care until discharge. We feel so much better knowing he will be in the care of one team and not multiple. They treat at least 60 babies a year from all over the U.S. with an overall survival rate of 95%. We prayed for God to lead us in the hands of the best care and we are confident John Hopkins is just that. There are many moving parts trying to figure out how we can make this work for our family and remain faithful that God is leading our way.

I will be moving there at 34 weeks for close monitoring and I am scheduled for induction on December 28th. We will stay there for as long as the baby is in the NICU and until he is healthy and ready to come home. Unfortunately, that time is undetermined so we really have no idea how long we will need to be there. With help and support from family and friends, we are praying that Jordan and Elaina can move out there with me and Bailee can come visit as much as possible.

With all of this, we are asking our friends and family for support of any kind. All donations and contributions will go to our bills at home, travel costs, transportation, housing, medical bills, our insurance cobra premium, food, and necessities for our family and baby boy while living in Florida and in the hospital with our son. Any donation is appreciated and no amount is too small! Anything helps! If you can’t contribute financially, we understand. Please continue to pray for our family as we prepare for this big life change and healing for our son.